Faces of RP

No one can expect a fair answer from a doctor in regards to the quality of life post therapy. They only treat and that includes their specialty or business interests. The following two links comparing surgery against radiotherapy and vice versa are evident demonstration on the issues involved. While the radiologists take the side effects into consideration the "Counterpoint"-by an urologist focus on the treatment outcome. Interesting indeed;

Which-treatment-modality-in localized-prostate-cancer-yields-superior-quality-life;

http://www.cancernetwork.com/prostate-cancer/point-which-treatment-modality-localized-prostate-cancer-yields-superior-quality-life-radiotherapy

http://www.cancernetwork.com/prostate-cancer/counterpoint-which-treatment-modality-localized-prostate-cancer-yields-superior-quality-life

Best,

VG

It has been 11 years since my diagnosis and RP surgery.  Quality of life has been the central struggle and challange during this period. My doctor all but assured me that I only had a 5%  chance of being incontinent or impotent.  Well, it turned out that the 5% was in fact 100% as it relates to impotence; however, incontinence is very mild but does exist. I didn't hide from life. I tried every form of ED treatment I could afford, and I have even seen a therapist regularly for 10-years. The failed relationships, male identity crisis, fear of rejections, and vulnerability were a constant. I have recently begun adjusting to a life without female relationships.  I had surgery at age 47.  I was very young and uninformed. I firmly that my doctor was too cavalier with my life. I felt violated and cheated by him.  It seemed almost criminal.  But what can you do after the fact? I had to find a new normal.  It took me 11 years. It was a very, hard and long road. I did prevail not because of, but in spite of, the doctors. I will give special credit to my therapist. She specialized in body trauma.  I am not sure that I could have made it this far without her kind ear.  

Hi,

Good to hear you had a sucessful outcome from your RP.  Very good story on your RP journey, sounds like you did your research and made your choice.  According to MK1965 & Swing, you & I must be the only two people within five galaxies that have had a success.  That's why I have always said to get the best doctors & hospitals for any type of cancer treament, surgery or radiation.  And oh by the way my penis still seems to be just about as long as before, but then again I never was obsessed about the length of my member.  Surgery is a good and viable option with a lot of good sucess stories, the same goes for the various forms of radiation treatments.  We should be able to come to this forum and get realistic, honest facts and real life experiences and not scare tactics who favor one form of treatment over another.  Do you research and pick you choice based on facts and not someones biased opinion.

Dave 3+4

I've been reading on this site for a number of months, and researched.   I also belong to another forum which I have been more active.   This post lead me to create an account and post. 

I have read many stories of issues after RP, as well as good outcomes.  They concenred me to an extent during my decision process this past summer.   However, as in most Internet sites, whether Amazon or Forums, I think people with issues tend to be more vocal and sound alarms to protect others.   All in all a great thing.  However, with my diagnonsis June 2017, I was able to talk with people around my core set of freinds adn their faimily members who directly had prostate sugery and radiaiton.  I put as much stock in their opinions, and maybe more, than those I read online.  All but one I met face to face had RP.  All but one had near-zero issues a few months after surgery and retuned to a very active normal life.  The one with issues had regrets, but did not vocalize he wished he had been treated differently.  The only one treated with radiation had wished he had surgery, he was at the 5 year mark.   He was better early on, but his incontinence issues had been continually degrading quickly.  He was really down.   It was a very small sampling of 5 people.   I write this only as my pesonnal reference tot me as you read on.

I met with three good surgeons.  First Open Sureon,  I don't recall a reference to penis length.  The second an RP sureon as he explained the surgery talked about the removal.  As he told me they would remove the prostate by snipping the urethra at base and apex and then stitch urethra and bladder togther, I immediately visualized the process.  I asked him which end makes up the loss.  He chcukled and told me it was a good queston, "either the bladder drops a bit, or yes the penis will be shorter".   I had my answer.  Never asked surgoen number three but didn't need to, but he made a quick comment about it.

End of August 2017, I had my RP.  Catheter removal after 2 weeks and I had zero issues with incontinence once removed, not a drop.  Mayo gave me a #4 huggies as a pad on the drive home, it was dry all day.  Wore a diaper two nights just in case, was never wet in the morning.   Woke once each night to pee.  After the second night, never used one again, and never used a pad since the drive home from the hospital.   My story more closely aligned with the people I talked to then what I read on the forums.

I have no real ED issues.   Still not 100%, but it's better thatn 80% and I figure in a year it'll be closer to 95%.  When I step out of the shower, is my littel buddy shorter?   I'd say most mornings he seems to be, but not always.  When erect, I'm not so sure, I haven't really noticed a difference.

Tens of thousands of men have this surgery.  Hundreds are active on these forums.   Probably the same percentage as the few I talked to compared to those I comminucate to on a forum.

My advice to friends as they age wth me, as they may have prostate issues, will be the same as I state here.   Research your options fully, make the decisoin you feel right is for you and hope for a cure and be ready for side effects in teh short and long term.  But I wil let them know how it worked for me.

One more note, it is hard to post a great success story as I read others with not so good outcomes.  It is why I tend to stay silent, read and continue to learn for me only.  But I do want people to know this surgery does and can work very well.  I don't believe I am a small minority.   I think all of this ties into your overall health going in, the agressiveness and stage of your cancer,  and the size of your prostate ties into this at surgery time.  OH!! and without a doubt, the skill of you surgeon.

I was a diganosed 4+3.  Pathology downgraded to 3+4, small margin of <.1 cm and my very recent first post-op PSA at 90 days was <.04

In this thread it is so good to hear from at least one other guy who has had to deal with SERIOUS PATHOLOGY. I will forever remember his quote... Everyone I know that had seeds or radiation around the same time I had my RP are dead.  And here's another one for you... "Dead men have no erections"... and apparently neither do men on Lupron.

For the rest of you, I have to ask, where the heck are your priorities?!!  If the size of your penis is your greatest concern, then as someone else noted, you have problems elsewhere to deal with.

As I read this thread I just shake my head. Going into my fifth year battling high risk prostate cancer, I can't help but be amazed at where your heads must be. You should consider yourself fortunate if you had a '3' appear in your path report. And realize that without an RP, you would not even HAVE a pathology report. Likewise if you had a single digit PSA, or if your cancer was detected on the first biopsy, if you even qualified for something like Cyberknfe or heck, even if your doctor took you seriously when your symptoms first appeared.

Now I've had both an RP plus eight weeks of daily radiation and I'm still on Lupron, plus cannot pee without first squeezing the bulb in my scrotum. The proctitis and frequent diarrhea brought about by the radiation is the worst side effect that cannot be dealt with, uh,  mechanically. Given the opportunity to go back and change anything, it would be to have had the surgery much sooner, and none of the rest would likely have been necessary. And now the scars from my RP and AUS surgeries join the rest of the no less than sixteen surgical scars on my body.

So if you're griping because your tiny weenie got an inch shorter, MAN UP. And pray that this is the worst health problem you will ever have to face in your lifetime.

I have followed MK's posts since my diagnosis and can understand his concerns. Prior to surgery I was low-risk, low volume Gleason 6. I was concerned about ED, incontinence and size but wanted to be aggressive and went ahead with RP. The good news was that I emerged with no ED, no incontinence, and perhaps a minor, hardly noticable reduction in size. But the bad news is that I still have cancer. First PSA was .40 and now I'm scheduled for Salvage Radiation and have had the Lupron shot. 

Everyone's experience is different. It's understandable to be upset about ED and loss of size. I'd rather worry about those things then about arresting the cancer. It's like there should really be two Forums....one for those who are continuing the battle with cancer and one for those who have had success against PCa but are dealing with side effects. 

fishinguy said:

For me, respectfully a different opinion

I've been reading on this site for a number of months, and researched.   I also belong to another forum which I have been more active.   This post lead me to create an account and post. 

I have read many stories of issues after RP, as well as good outcomes.  They concenred me to an extent during my decision process this past summer.   However, as in most Internet sites, whether Amazon or Forums, I think people with issues tend to be more vocal and sound alarms to protect others.   All in all a great thing.  However, with my diagnonsis June 2017, I was able to talk with people around my core set of freinds adn their faimily members who directly had prostate sugery and radiaiton.  I put as much stock in their opinions, and maybe more, than those I read online.  All but one I met face to face had RP.  All but one had near-zero issues a few months after surgery and retuned to a very active normal life.  The one with issues had regrets, but did not vocalize he wished he had been treated differently.  The only one treated with radiation had wished he had surgery, he was at the 5 year mark.   He was better early on, but his incontinence issues had been continually degrading quickly.  He was really down.   It was a very small sampling of 5 people.   I write this only as my pesonnal reference tot me as you read on.

I met with three good surgeons.  First Open Sureon,  I don't recall a reference to penis length.  The second an RP sureon as he explained the surgery talked about the removal.  As he told me they would remove the prostate by snipping the urethra at base and apex and then stitch urethra and bladder togther, I immediately visualized the process.  I asked him which end makes up the loss.  He chcukled and told me it was a good queston, "either the bladder drops a bit, or yes the penis will be shorter".   I had my answer.  Never asked surgoen number three but didn't need to, but he made a quick comment about it.

End of August 2017, I had my RP.  Catheter removal after 2 weeks and I had zero issues with incontinence once removed, not a drop.  Mayo gave me a #4 huggies as a pad on the drive home, it was dry all day.  Wore a diaper two nights just in case, was never wet in the morning.   Woke once each night to pee.  After the second night, never used one again, and never used a pad since the drive home from the hospital.   My story more closely aligned with the people I talked to then what I read on the forums.

I have no real ED issues.   Still not 100%, but it's better thatn 80% and I figure in a year it'll be closer to 95%.  When I step out of the shower, is my littel buddy shorter?   I'd say most mornings he seems to be, but not always.  When erect, I'm not so sure, I haven't really noticed a difference.

Tens of thousands of men have this surgery.  Hundreds are active on these forums.   Probably the same percentage as the few I talked to compared to those I comminucate to on a forum.

My advice to friends as they age wth me, as they may have prostate issues, will be the same as I state here.   Research your options fully, make the decisoin you feel right is for you and hope for a cure and be ready for side effects in teh short and long term.  But I wil let them know how it worked for me.

One more note, it is hard to post a great success story as I read others with not so good outcomes.  It is why I tend to stay silent, read and continue to learn for me only.  But I do want people to know this surgery does and can work very well.  I don't believe I am a small minority.   I think all of this ties into your overall health going in, the agressiveness and stage of your cancer,  and the size of your prostate ties into this at surgery time.  OH!! and without a doubt, the skill of you surgeon.

I was a diganosed 4+3.  Pathology downgraded to 3+4, small margin of <.1 cm and my very recent first post-op PSA at 90 days was <.04

Glad you are doing well. Im thinking about surgery at this time 3+3=6 gleason t2a tumor left apex 25% .  psa 2.97 just found out last month.

Any suggestions greatly appreciated.  Been to local urologist and also Vanderbilt for slides re read. 

First off I must apologize for the tone of my earlier post above. I promised myself that I would not post when feeling like a cynical old man, but I did and it came off sounding both bitter and insensitive.  But please understand that I do not regret the RP at all, eventhough it has changed my life dramatically.

The decision to get the AUS and thereby altering how I must do something that we all do all day, every day for the rest of my life was a more difficult decision than was the RP. And the decision to remain on HT for the time being was also not taken lightly, especially since the outcome of the HT+RT will not be known for at least another year from now.  And the SE's of the HT plus the emotional trauma of battling cancer since early 2014 now has me taking antidepressants, for the first time ever, and probably for the rest of my life. None of this was easy, but it DID save my life as well as my marriage and I will never forget that.

Yes, the surgeon saved my life. My wife and I DID consult with RO's and chose surgery for a varrety of factors. I will spare the details here, but will also add that my experience with the RP and the surgeon who performed it was the most favorable experience of the dozen or so surgeries that I've ever had... and I say this even in light of the fact that it left me both incontinent and impotent and STILL required a full course of radiation a year later.

So yes, I know what it is like to have had a bad experience with illness or injury and especially surgery, and the lasting effects they can have on your psyche as well as physical abilities and emotional well being. I have been bitter about the outcomes of my own experience with surgeons. But that bitterness affects one's self more than anyone else. And it takes time - years - to get over it. The anger eats away at you from the time you wake up til you finally drift off to sleep, emotionally exhausted.

But eventually you realize that you made the best decision you could at the time and given the information you had at that time. You can't go back and change ANY of that. Guilt and regret will haunt you until you accept that any other course of action could have potentialy had far worse consequences. Consider THAT as a possibility.

Thank you all for your contributions. We all suffer together, as well as hopefully help each other with our struggles.